[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 611 Introduced in House (IH)]

111th CONGRESS
  1st Session
H. RES. 611

    Supporting the goals and ideals of ``Fragile X Awareness Day''.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                              July 7, 2009

   Mr. Hare (for himself, Mr. Delahunt, Mr. Harper, and Mr. Bilbray) 
submitted the following resolution; which was referred to the Committee 
                         on Energy and Commerce

_______________________________________________________________________

                               RESOLUTION


 
    Supporting the goals and ideals of ``Fragile X Awareness Day''.

Whereas fragile X syndrome is the most commonly known cause of inherited mental 
        impairment in the world;
Whereas an expansion of the CGG trinucleotide repeat in the FMR1 gene--a human 
        gene that codes for a protein called fragile X mental retardation 
        protein--causes almost all cases of fragile X syndrome;
Whereas fragile X mental retardation protein is normally made in many tissues, 
        especially in the brain and the testes;
Whereas fragile X mental retardation protein may play a role in the development 
        of synaptic connections between nerve cells in the brain where cell-to-
        cell communication occurs;
Whereas there is a unique relationship between fragile X syndrome and autism;
Whereas fragile X syndrome is the most commonly known single-gene cause of 
        autism;
Whereas up to one-half of all children diagnosed with fragile X syndrome also 
        have autism or an autism spectrum disorder;
Whereas over 100,000 people in the United States have fragile X syndrome and 
        over 1,000,000 people in the United States carry a fragile X mutation 
        and have or are at risk of developing a fragile X-associated disorder;
Whereas fragile X-associated disorders include fragile X syndrome, which causes 
        language, behavioral, and developmental disabilities; fragile X-
        associated tremor/ataxia syndrome--an adult onset progressive 
        neurological condition causing tremors and balance and memory problems 
        primarily in male carriers that can lead to decreased life expectancy; 
        and fragile X-associated primary ovarian insufficiency--a cause of 
        infertility, early menopause, and other ovarian problems in female 
        carriers;
Whereas doctors can accurately identify and diagnose fragile X syndrome, fragile 
        X-associated tremor/ataxia syndrome, and fragile X-associated primary 
        ovarian insufficiency;
Whereas the National Institutes of Health is currently funding a study that will 
        lay the groundwork for screening of all newborns in the United States 
        for early detection of the fragile X mutation;
Whereas increased research into fragile X syndrome can lead to a better 
        understanding of the disorder, more effective treatments, and an 
        eventual cure; and
Whereas advocacy organizations have designated July 22 as ``Fragile X Awareness 
        Day'': Now, therefore, be it
    Resolved, That the House of Representatives--
            (1) supports the goals and ideals of ``Fragile X Awareness 
        Day'';
            (2) supports raising awareness and educating the public 
        about fragile X syndrome and associated disorders;
            (3) applauds the efforts of advocates and organizations 
        that encourage awareness, promote research, and provide 
        education, support, and hope to those impacted by fragile X 
        syndrome;
            (4) recognizes the commitment of parents, families, 
        researchers, health professionals, and others dedicated to 
        finding an effective treatment and cure for fragile X syndrome;
            (5) urges all physicians, health care providers, and 
        specialists to--
                    (A) learn the clinical signs and symptoms of 
                fragile X syndrome, fragile X-associated disorders, 
                fragile X-associated primary ovarian insufficiency, and 
                fragile X-associated tremor/ataxia syndrome;
                    (B) use diagnostic, developmental screening, and 
                surveillance modalities to detect fragile X-associated 
                disorders;
                    (C) test, when appropriate, individuals exhibiting 
                signs of developmental delay or an autism spectrum 
                disorder to determine the status of their FMR1 gene;
                    (D) gain a full understanding of the genetic 
                implications of all fragile X-associated disorders, and 
                when appropriate, make a referral to a geneticist or 
                genetic counselor to assure that affected individuals 
                and their families are aware of how a fragile X-
                associated disorder may impact their extended family; 
                and
                    (E) provide patients diagnosed with fragile X-
                associated disorders with supplemental information 
                maintained by the Centers for Disease Control and 
                Prevention, the National Institute of Child Health and 
                Human Development, and private foundations such as the 
                National Fragile X Foundation and the FRAXA Research 
                Foundation;
            (6) encourages all private and public health insurance 
        entities to provide full coverage for screening technologies, 
        appropriate followup referrals, and genetic counseling services 
        related to the detection, proper diagnosis, and treatment of 
        fragile X-associated disorders;
            (7) recommends that the National Institutes of Health and 
        related member institutes fully implement the research plan on 
        fragile X syndrome and associated disorders developed by the 
        Trans-NIH Fragile X Research Coordinating Group and Scientific 
        Working Groups; and
            (8) supports increased funding for research into the 
        causes, treatment, and cure for fragile X syndrome.
                                 <all>